Friday, October 14, 2011


I'm going off the rails of the Crazy Train....... Called Effexor withdrawal!!

Man, this stuff is brutal. If anyone has ever stopped an SSRI (anti-depressant) than you know where I am coming from. It is no picnic. 

I decided to stop my medication called Effexor. It is an anti-depressant that I went on when I was diagnosed. I truly needed it then, and I think it helped. 

After my diagnosis I took a left turn to crazy town for a while. I was depressed and anxious, felt doom (especially after reading the life expectancy and prognosis for Systemic Sclerosis). Now of course I know better and have come to a place of understanding and acceptance, but as newly diagnosed and after spending time on the Internet - It's no wonder why I nutted up like a fruit cake for a while. 

It has been TWO years now, officially this October 2011 and I am feeling so much better about everything, so I decided to discontinue my medication. I have my doctors blessing and am doing everything by the book. I am (was) excited to get off the stuff as I think it added to my weight gain these past two years - and now finally getting back to full fledged work outs again - having one less thorn in my side in the war against weight sounded like a win win. 

Let me tell ya tho - As glad as I am to be finally getting off this med, these withdrawals are no joke!! I don't think I could ever be a junkie - cause coming off this stuff is brutal enough. I'm talking true withdrawals here peeps!!

It is weird stuff. I swear I feel like I am walking on marshmellows, while sticking ice picks in my temples at a Grateful Dead concert. It's a trip - and not a good one. 

Every once in a my brain gets defibrillated and I get these "Zaps". It's crazy stuff (no pun intended). I sent out a "Twitter" about it (yes..I'm a total nerd and I Twitter too!) and I got so many responses from people saying they feel it too. 

Of course I looked it up on line, and there is a lot of stuff to say about Effexor withdrawal. None good of course. Nothing life threatening or anything like that - just that it really sucks bad and they should ban the stuff! lol - Nice. Wish I knew that before! 

So of late I walk around my house in my marshmellow shoes with my Zapidy Doo Da on waiting for this crud to stop. Just gotta ride it out. 

For the record - anyone else thinking of discontinuing the stuff - there is a method to the madness so please taper down slowly. Taper down is manageable - it's just this last part when you are completely off that you wanna take the last train to Clarkesville  - Promise!

Good thing I am not a conspiracy theorists or live near a cult, cuz my brain is jello - who know's what I'd be sucseptable too (don't tell my kids) and my body feels like I just retired from the WWF. 

There is nausea, dizziness, brain zaps, fatigue, dumbness - as in I forgot where to put back the butter?, flu like feeling, aches, trippy hung over feeling and any weird thing you could possibly feel in your brain - you pretty much do. 

But - There is a light at the end of the tunnel, and that is being blessed enough of having gotten to a place where I can stop this medication. I am grateful and I am happy to have gotten to this last stop on the crazy train. 

I will of course keep everyone posted, but I am definatly taking a few days off to let my brain heal!! lol 

I am a firm believer in not hiding or making mental illness a shameful thing. I have a brother that is Bi-polar and I myself have struggled with depression off and on throughout my life. If a pill can help change the quality of your life - I say "Bring It!" - Life is a gift and there is no reason you should not try to enjoy every day you live it. For me - the time has come to stop my Effexor and see if the sun still shines bright. 

Right now, there are a few clouds during this withdrawal process - but I am sure there are clear skies ahead! Let the Sunshine In!

**Just a quick side note*** Georgia - I have not received my test results back yet from my echo, and I have not gone for my CT scan(s), EGD - Colo or PFT yet. 

Thursday, October 13, 2011

Refresher Course on The Big S

Systemic sclerosis

Symptoms and Complications:

Raynaud's Phenomenon

Raynaud's phenomenon is often the first sign of the scleroderma disease process. With this condition, small blood vessels narrow in the fingers, toes, ears, and even the nose.
Attacks of Raynaud's phenomenon can occur several times a day, and are often brought on or worsened by exposure to cold. Warmth relieves these attacks. In severe cases, attacks can develop regardless of the temperature. Severe cases may also cause open sores or damage to the skin and bones, if the circulation is cut off for too long. Stress also can trigger the syndrome.
Typically, the fingers go through three color changes:
  • First, they become very pale.
  • As the blood flow is cut off, they turn a bluish color, usually in the top two sections of the second and third fingers.
  • Finally, when blood flow returns, the fingers become red.
Tingling and pain can occur in the affected regions.

Raynaud's phenomenon
Click the icon to see an image of Raynaud's phenomenon.
Raynaud's is very common and occurs in 3 - 5% of the general population. It's important to note that more than 80% of patients with Raynaud's phenomenon do not have scleroderma, lupus, rheumatoid arthritis, or other serious illnesses. Raynaud's is more likely to be a symptom of scleroderma or some other connective tissue disease if it develops after age 30, if it is severe, and if it is accompanied by other symptoms (such as skin changes and arthritis).

Skin Changes

Course of Typical Skin Changes. The primary symptoms of scleroderma occur in the skin. They often take the following course:
  • Typically, pitted scars appear first on the hands. The skin begins to thicken and harden on the hands, feet, and face. The fingers may swell. This condition is called sclerodactylia or acrosclerosis. Patients with diffuse scleroderma may have swelling of the whole hand before the skin significantly thickens.
  • Thickened or hardened patches may also develop on other areas of the body. (Their appearance on the trunk and near the elbows or knees tends to be a sign of a more severe condition.)
  • For the first 2 or 3 years, the skin continues to thicken and feel puffy.
  • This process then stops, and can even get better. The skin may soften.
  • As the disease progresses further, however, the skin loses its ability to stretch, and becomes shiny as it tightens across the underlying bone, particularly in the fingers, toes, and around the mouth.
  • Eventually, in severe cases, the fingers may lose the ability to move, and can be difficult to bend. The hands and feet may curl from the tightness of the skin. It may be difficult to open the mouth widely.

Click the icon to see an image of sclerodactylia.
Other Skin Changes. The following skin symptoms may also occur:
  • Flat red marks, known as telangiectasis, may appear in various locations, usually the face, palms, lips, or the inside of the mouth.

Click the icon to see an image of telangiectasia.
  • In calcinosis, small white lumps form beneath the skin, sometimes oozing a white substance that looks like toothpaste. Calcinosis can lead to infections.
  • Small blood vessels at the base of the fingernails may be severely narrowed in some places, and may widen in other places. This is an indication that internal organs might be involved.
  • The entire surface of the skin may get darker over time, and contain patches of abnormally pale skin.
  • Hair loss may occur.
  • About 1% of patients have Sj√∂gren syndrome, a group of symptoms that include dry eyes and dry mucus membranes (such as those in the mouth).
  • Inside the mouth, scleroderma can also cause changes that impair gum healing.

Bone and Muscle Symptoms

Changes in bones, joints, and muscles can cause the following symptoms:
  • Mild - Severe arthritis. The condition is usually distributed equally on both sides of the body.
  • Bone loss in the fingers. The destruction is not as severe as it is in rheumatoid arthritis, although the fingers may shorten over time.
  • Trouble bending the fingers, if the disease has affected the tendons and joints.
  • Muscle weakness may occur, especially near the shoulder and hip.

Digestive Tract Symptoms and Complications

Complications in the Upper Digestive Tract.
  • Esophageal motility disorder develops when scarring in the muscles of the esophagus causes them to lose the ability to contract normally, resulting in trouble swallowing, heartburn, and gastroesophageal reflux (also known as GERD). Some experts believe that patients with severe GERD may aspirate (breathe in) tiny amounts of stomach acid, which in turn may be a major cause of lung scarring.
  • About 80% of patients also experience impaired stomach activity. A delay in stomach emptying is very common.
  • Some patients develop "watermelon stomach" (medically referred to as CAVE syndrome), in which the stomach develops red-streaked areas from widened blood vessels. This causes a slow bleeding that can lead to anemia (low red blood cell counts) over time.
  • There may be a higher risk for stomach cancer.
  • Problems with movement of the food (motility) through the intestines also develop. Patients may experience an increase in bacteria levels in their intestines as a result, and have trouble absorbing nutrients from foods through their intestines.
Complications in the Lower Digestive Tract. Complications in the lower digestive tract are uncommon. If they do occur, they can include the following:
  • Scarring can cause blockages and constipation. In rare cases, constipation can become so severe that the bowel develops holes or tears, conditions that can be life threatening.
  • Scarring can also interfere with the absorption of fats in the intestines. This can lead to an increase in the number of bacteria in the lower intestines, which can cause watery diarrhea.
  • Fecal incontinence (the inability to control bowel movements) may be more common than studies indicate, because patients are reluctant to report it.
Many patients, however, have few or even no lower gastrointestinal symptoms.

Lung Symptoms and Complications

In severe cases, the lungs may be affected, causing shortness of breath or difficulty in taking deep breaths. Shortness of breath may be a symptom of pulmonary hypertension, an uncommon but life-threatening complication of systemic scleroderma.

Respiratory system
Click the icon to see an image of the respiratory system.
Lung problems are usually the most serious complications of systemic scleroderma. They are now the leading cause of death in scleroderma patients. Two major lung conditions associated with scleroderma, pulmonary fibrosis and pulmonary hypertension, can occur either together or independently.
Interstitial Pulmonary Fibrosis. Scleroderma involving the lung causes scarring (pulmonary fibrosis). Pulmonary fibrosis occurs in about 70% of scleroderma patients, although its progression is very slow and patients have a wide range of symptoms:
  • Some patients may not experience any symptoms.
  • When pulmonary fibrosis progresses, patients develop a dry cough, shortness of breath, and reduced ability to exercise.
  • Severe pulmonary fibrosis occurs in about 16% of patients with diffuse scleroderma. About half of these patients experience the most profound changes within the first 3 years of diagnosis. In such cases, lung function worsens rapidly over that period, and then the progression slows down.
Pulmonary fibrosis also places the patient at higher risk for lung cancer. This condition may be due to severe dysfunction in the esophagus, which causes patients to aspirate tiny amounts of stomach acid.
The most important indication of future worsening in the lungs appears to be inflammation in the small airways (alveolitis). Doctors detect alveolitis by using a lung test called bronchoalveolar lavage.
Pulmonary hypertension is the narrowing of the pulmonary arteries in the lung. The narrowing of the arteries creates resistance and increases the workload of the heart. The heart becomes enlarged from pumping blood against the resistance. Some symptoms include chest pain, weakness, shortness of breath, and fatigue. The goal of treatment is to control the symptoms, although the disease usually develops into congestive heart failure.
Primary pulmonary hypertension

Pulmonary Hypertension. Pulmonary hypertension is the narrowing of the pulmonary arteries in the lung. The narrowing of the arteries creates resistance to blood flow and increases the workload of the heart. The heart becomes enlarged from pumping blood against this resistance. Some symptoms of pulmonary hypertension include shortness of breath, chest pain, weakness, and fatigue. Shortness of breath,the primary symptom of pulmonary hypertension, worsens over time. The goal of treatment is to control the symptoms, although the disease usually develops into congestive heart failure.
Pulmonary hypertension can develop in one of two ways:
  • As a complication of pulmonary fibrosis
  • As a direct outcome of the scleroderma process itself. In this case, it is most likely to develop in patients with limited scleroderma after many years.

Cor pulmonale
Click the icon to see an image of cor pulmonale.

Kidney Symptoms and Complications

Signs of kidney problems, such as increased levels of protein in the urine and mild high blood pressure (hypertension), are common in scleroderma. As with pulmonary hypertension, the degree of severity depends on whether the kidney problems are acute or chronic.
Slow Progression. The typical course of kidney involvement in scleroderma is a slow progression that may produce some damage but does not usually lead to kidney failure.
Renal Crisis. The most serious kidney complication in scleroderma is renal crisis. It is a rare event that occurs in a small number of patients with diffuse scleroderma, most often early in the course of the disease. This syndrome includes a life-threatening condition called malignant hypertension, a sudden increase in blood pressure that can cause rapid kidney failure. This condition may be fatal. However, if the condition is successfully treated, it rarely recurs.
Until recently, renal crisis was the most common cause of death in scleroderma. Aggressive treatment with drugs that lower blood pressure, particularly those known as ACE inhibitors, is proving to be successful in reducing this risk.

Heart Symptoms and Complications

Many patients with even limited scleroderma have some sort of functional heart problem, although severe complications are uncommon and occur in only about 15% of patients with diffuse scleroderma. As with other serious organ complications, they are more likely to occur within 3 years after the disease begins.
Fibrosis of the Heart. The most direct effect of scleroderma on the heart is fibrosis (scarring). It may be very mild or it can cause pain, low blood pressure, or other complications. By damaging muscle tissue, the scarring increases the risk for heart rhythm problems, problems in electrical conduction, and heart failure. The membrane around the heart can become inflamed, causing a condition called pericarditis.

Click the icon to see an image of pericarditis.
Pulmonary hypertension and hypertension associated with kidney problems in scleroderma can also affect the heart.

Other Symptoms and Complications

Other complications of scleroderma may include the following:
  • Patients with CREST may be at increased risk for biliary cirrhosis, an inflammatory autoimmune disorder of the liver.
  • Nerve damage may occur in the extremities (legs and feet, arms and fingers), causing numbness and pain. This damage can progressively worsen and lead to severe open sores (ulcerations), particularly in the hands. The feet are less often affected, but when they are, the disease tends to affect the joints and cause pain.
  • Bone loss (osteoporosis) can occur because of impaired blood flow.
  • About half of scleroderma patients develop underactive thyroid gland (hypothyroidism).

Click the icon to see an image of hypothyroidism.
  • Erectile dysfunction, usually due to scarring of the penis, may be one of the first complications of the disease in men.
  • Systemic scleroderma does not generally affect fertility in women. Pregnant women with scleroderma, however, have a slightly increased risk of premature birth and low-birth-weight babies. Although they can carry a baby to term, because complications such as kidney crisis can occur with the disease, pregnant women with scleroderma need to be monitored closely in a high-risk obstetric facility.
  • More than half of scleroderma patients are likely to experience significant depression. Researchers say it may be beneficial for scleroderma patients to be routinely screened for depression.
  • Autoimmune Diseases tend to "Group" meaning you may have more than one autoimmune condition as the immune system attacks itself; Hypothyroid, Rheumatoid Arthritis, Sjogrens, etc

Your so Vein! In your face!

Or should I say - On your face! 

Or mine at least. Telangectasia, that is. Little red spots that cause the need to wear thicker makeup. Good Bye Bare Minerals! 

What are they, other than part of the "Big S"? (Scleroderma -and Crest)

Here is a copy and pasted definition since I probably would not do it justice: 

Telangiectasias are small dilated blood vessels[1] near the surface of the skin or mucous membranes, measuring between 0.5 and 1 millimeter in diameter.[2] They can develop anywhere on the body but are commonly seen on the face around the nose, cheeks, and chin. They can also develop on the legs, specifically on the upper thigh, below the knee joint, and around the ankles. 
Why do you get them with Scleroderma? Well - no one is exactly sure - we just do, but since the Big S is a connective tissue disease that affects blood vessels - it makes sense that we would. 

Making sense does not change the fact that, well, I am vain - And I don't really want to look at them! After having a "pick fest" at my magnifying mirror the other day, I noticed that I am getting more of them recently. A few good ones on my forehead, many around my nose (which is common for anyone I think), some collections on my cheeks, although faint for now, "a change is gonna come" and they are a comin'

So, looks like my Bare Minerals Days will be coming to an end and I will be a liquid foundation - powder set kinda girl. No biggie - It's just that I finally started to like the stuff! Finally got down that ol' Kabuki Brush technique. Oh well....Wrinkles or Red Dots? Hmmmm - lol. The quandary of the vain sclero. 

Well, not really too much to post. I had a few minutes so I thought I would share about the telangectasia. I am noticing more. They are a part of the disease. I don't think I have posted about them previously - but they are part of the party, so they've been invited to the blog. 

As a side note - To honor a Beautiful friend of mine who's son also knows a thing or two about "Telangectasia" I must make mention of another Horrible, Rare, Incurable Disease that these little red pests are a part of. It is called Ataxia Telangectasia. It affects the young. It is chronic, debilitating, progressive, incurable, and sadly terminal at a young age and we must fight to find a cure for this disease too! It robs these children of so much and so young. Please visit the AT Children's Project website at: ATCP.Org 

As always - Thank you for reading and I hope if you are living with this disease, it reminds you that you are not alone. This disease is SO variable - so I try to list EVERYTHING I feel, have felt, or wonder if is related, since the websites usually only lists the common symptoms, and there is nothing more lonely than not finding yours among them. Especially when said symptom begins to change your life. I hope this helps, if not even a little. 

I will be writing a post soon about ALL of the things I have felt or had change since my diagnosis - I am going through all of my paperwork and notes as part of my yearly visits, so please watch for that as some of the stuff is never written about, yet when reaching out to other Sclero's MANY of them report feeling/having the same thing. FYI - CT chest on Monday the 17th. Echo done on Monday the 10th. Colo and EGD scheduled for Nov 2, CT abd and PFT are TBD at this point. 

Hope this finds you happy, smiling and doing well. 

Peace and Love!!

P.S. Wish we had an "Occupy Scleroderma!" 

Wednesday, October 5, 2011

GERD is the Word

Well, I finally got over my bout of the Heebie-GP's - Gastroparesis only to have a couple weeks of GI issues and the dreaded GERD flare up - Hence the reason I haven't written in a few. 

Ah the dreaded infamous ever chronic GERD us Sclero's have to deal with, like an unwanted appendage, not fun, not wanted - but there. We are all "supposed" to be on prophylactic PPI medications, but this girl was feeling pretty good for a while and went off of them and was sorely reminded why it's a good idea to listen to your doctor. This last bout of GI issues was like swallowing hot coals and getting hit with an iron skillet on a daily basis. Not Fun!

My GP finally did resolve. I was able to eat, get everything down, and was able to keep everything down so Great! Game on!! Right? Well, turns out No. I guess from the stasis (stagnant state) within my bowel, it caused some serious bacterial overgrowth, which caused some horrible gas and bloating, which led to fetal position - tush up in the air - cramps and an inability to completely empty my bowels. When I could, I had serious cramps and would "Koo Koo Clock" (if you haven't read my blog - Koo Koo clocking is what I call having an bowel movement then turning around and needing to throw up only to turn right back around again). I know - Graphic imagery - But that's the reality of it. This is Scleroderma. The Good - The Bad and The Ugly

I was also getting serious GERD. It was so bad for a while that I had that constant cough, felt the bubbles coming up which is both a. A trip and b. Pretty uncomfortable. I felt like a human 7up for a while, only not Effervescent just in pain. I had a red raw sore throat from the reflux, my tummy burned like nobodies business and I couldn't eat anything that wasn't two steps away from bland. 

I ended up seeing the GI which I was planning to anyway due to the GP bout, and because it's October and about time. He chastised me for not staying on my Omeperzole and wrote me a new RX stating that "even if I feel good" - to keep my esophagus in shape and working for the long haul, this is now a forever med. I was put on a round of Flagyl for the bacterial overgrowth and Wowzer's, can I feel a difference. My lower abdomen distension is resolving so HELLO again jeans!! I also feel less gassy and bloated. He also RX'd something for GI cramps and my BFF Carafate (which is so great I wrote an entire blog on!) Carafate coats your esophagus and tummy, like a snuggie - you feel so warm, safe and cozy after it slides down and leaves it's protective coat on your insides making you able to eat without pain and keep your insides from feeling raw. It's good stuff. If you want to try it - make sure you get the Liquid. It'll be your Tummy Buddy too. Promise. 

I also had to start my supplements again too (shhh...yes I let those go to the wayside too) and start on the Vitamin D and B12 as my labs were low again (no parietal antibodies for you medical guru's - just plain ol' malabsorption). 

So, all in all I had added about 5 new meds to the mix, back on board and ready to join the party - but I am feeling 90% better than I was, so I will take it. Bring on the Co-pay - Mama's gotta eat!! 

I am not 100% there yet. Still can feel a little GERD happening, still get the tickle cough now and them - but it is settling down. I tried eating Vinaigrette salad dressing the other day and it didn't go over so well, so I am still kinda eating bland - but that's okay because I am eating. 

Moral of the story - DO NOT stop your PPI's!! It's No Bueno..... I will keep you posted and update a little more on Friday. I am getting all of my "Yearly's" done this week (CT Chest, CT Abdomen, PFT, ECHO) so I am on Sclero Overload. I will be getting that EGD and Colo done as well, so I will keep you posted on that too. Wahoo - Lucky you! 

Bye For Now and I hope this finds everyone healthy, happy and feeling well. 

Peace and Love ~